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CHfather last won the day on July 9

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About CHfather

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  1. CHfather

    My CHer fiancé wakes up with CH & erection?

    Be123, as FunTimes says, your fiancé should not be relying only on psilo (if he is), and he should have oxygen (if he doesn't). Some things I've learned over the years are discussed in this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Down toward the end of that file, there is this short paragraph, which could possibly be relevant to your situation: "Some people have reported that sex stops their attacks. Other people have been amazed that it’s even possible to consider sex during an attack." Overall, related to a different question you asked, I don't think there is evidence that general exercise helps directly with CH. Of course, it can affect overall mood and probably psychological resilience. As with all things CH, there are different experiences. Some people find that vigorous activity can make an attack less severe after the attack has started, but many people don't find that it helps; some people find that vigorous exercise can bring on an attack when they're not having one, others have attributed a decrease in attacks to exercising vigorously. So he'd have to find out where he fits in all those two-sided possibilities.
  2. CHfather

    Newbie here from Iowa

    Suggest you read the whole section on oxygen here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ This is an excerpt that might be particularly relevant in the short run: To avoid frustration, it might be wise for you to contact your O2 supplier before their first delivery to make sure you are getting the right equipment. Many of them are not used to providing for people with CH. You want cylinders (tanks), not a concentrator. At the least, you want one large tank (an M tank or H tank) and one smaller tank for portability (an E tank). Multiple versions of each tank are better. You need some kind of stand, at least for your larger tank(s). A rolling stand is best. You want regulators that go up to at least 15 liters per minute (lpm), and preferably up to 25 lpm. (I say "regulators," plural, because the large tanks and the smaller tanks take different types of regulators.) And you want a NON-REBREATHER mask. These are all things they should know to give you to treat CH, but often don’t. When the stuff is delivered, have the delivery person set it up for you and be sure it's working.
  3. "The percentage of patients who had a reduction of at least 50% in headache frequency at week 3 was 71% in the galcanezumab group and 53% in the placebo group." This might make one as curious about the power of placebo as about the efficacy of galcanezumab (Lily's CGRP drug). (Also curious about why only results for weeks 1-3 are included, since apparently it was administered again at 1 month.) Trial of Galcanezumab in Prevention of Episodic Cluster Headache; Goadsby P, Dodick D, Leone M, Bardos J, Oakes T, Millen B, Zhou C, Dowsett S, Aurora S, Ahn A, Yang J, Conley R, Martinez J; New England Journal of Medicine (NEJM) 381 (2), 132-141 (2019) Tags: calcitonin (human synthetic) calcitonin (pork natural) calcitonin (salmon synthetic) BACKGROUND Episodic cluster headache is a disabling neurologic disorder that is characterized by daily headache attacks that occur over periods of weeks or months. Galcanezumab, a humanized monoclonal antibody to calcitonin gene-related peptide, may be a preventive treatment for cluster headache. METHODS We enrolled patients who had at least one attack every other day, at least four total attacks, and no more than eight attacks per day during a baseline assessment, as well as a history of cluster headache periods lasting at least 6 weeks, and randomly assigned them to receive galcanezumab (at a dose of 300 mg) or placebo, administered subcutaneously at baseline and at 1 month. The primary end point was the mean change from baseline in the weekly frequency of cluster headache attacks across weeks 1 through 3 after receipt of the first dose. The key secondary end point was the percentage of patients who had a reduction from baseline of at least 50% in the weekly frequency of cluster headache attacks at week 3. Safety was also assessed. RESULTS Recruitment was halted before the trial reached the planned sample size of 162 because too few volunteers met the eligibility criteria. Of 106 enrolled patients, 49 were randomly assigned to receive galcanezumab and 57 to receive placebo. The mean (±SD) number of cluster headache attacks per week in the baseline period was 17.8±10.1 in the galcanezumab group and 17.3±10.1 in the placebo group. The mean reduction in the weekly frequency of cluster headache attacks across weeks 1 through 3 was 8.7 attacks in the galcanezumab group, as compared with 5.2 in the placebo group (difference, 3.5 attacks per week; 95% confidence interval, 0.2 to 6.7; P = 0.04). The percentage of patients who had a reduction of at least 50% in headache frequency at week 3 was 71% in the galcanezumab group and 53% in the placebo group. There were no substantial between-group differences in the incidence of adverse events, except that 8% of the patients in the galcanezumab group had injection-site pain. CONCLUSIONS Galcanezumab administered subcutaneously at a dose of 300 mg once monthly reduced the weekly frequency of attacks of episodic cluster headache across weeks 1 through 3 after the initial injection, as compared with placebo. (Funded by Eli Lilly; ClinicalTrials.gov number, NCT02397473.). https://www.docguide.com/trial-galcanezumab-prevention-episodic-cluster-headache?tsid=5
  4. CHfather

    24hrs in

    Pupp, I'd suggest that you read this post. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  5. CHfather

    Newbie here from Iowa

    The standard pharma prescriptions for CH are verapamil as a preventive and oxygen and injectable sumatriptan (or triptan nasal spray) as abortives. Prednisone is sometimes used, though a five-day course is very short. Usually, verapamil is started at the same time as the prednisone, because the prednisone can stop pain (usually temporarily) while the verapamil takes effect. Verap effects should be monitored with ECGs. Verapamil doses should be increased every 10-14 days, but you've been 20 days with no increase (and no ECG?). Oxygen isn't a "next step," it's a first step. Apparently you have sumatriptan tablets, which have been shown to be useless. An MRI is standard procedure. All of those things are written up in all the standard medical references for treating CH, and your doctor followed none of them. That's the basis for my opinion. (My daughter, who is the person in my family that has CH, was very comfortable with the fancy downtown neuro who diagnosed and treated her for many years on the basis that she had trigeminal neuralgia, which was a ridiculous diagnosis.) (BTW, doctors don't recognize this (it's not in the literature) but it has been noted within the CH community that "immediate-release" verap seems to work better than the extended-release kind, so you might ask for this if it's not what you're getting.) You definitely have CH-like symptoms. OTOH, restlessness/inability to be still during an attack is actually a clinical indicator of CH, and what you describe is different from that. Do you have these overall symptoms year-round, or do they come in cycles of some weeks or months and then go away? Whatever it is you have (and I'm definitely not saying that it isn't CH), you've been suffering way too much. I'm glad you found your way here. If you haven't found your way to this list of possible triggers from the doc I linked you to before, you might take a look: https://clusterbusters.org/forums/topic/4568-triggers/ Since you get hit after dinner, some of the food things might be particularly relevant. MSG, which is in a lot of foods, is a particularly bad actor. You should start the D3 regimen right away. Linked to in that doc from my previous post. Could help you pretty quickly (10 days/two weeks or sometimes less), though it doesn't always work so fast. Top-line immediate things you could do, in my opinion, (all listed in the linked-to doc from my previous post) are to try an energy shot (such as 5-Hour Energy) at the onset of an attack, take Benadryl 25 mg 3 or 4 times a day, and try a pretty high dose of melatonin at night since your attacks tend to be nocturnal (starting at maybe 9mg of melatonin and working up as tolerated), drink lots and lots of water, and see whether you can identify any triggers. If you do melatonin at night, don't also do the Benadryl. Some people find that sleeping more upright (for example, in a recliner or even in a chair at a table with pillows) reduces nighttime hits.
  6. CHfather

    Newbie here from Iowa

    Moxie is a great source of advice. I just want to mention that the "key files" she refers to here are linked to in the "New Users...." info link that is at the top of each page in blue. Didn't want you worrying that you might have missed some critical information.
  7. CHfather

    Newbie here from Iowa

    Jeler, You've got great advice here so far. Plenty for getting on the right track. Some of the same information is repeated and expanded in this post, along with more detail about things that might help with the pain while you're taking care of the critical things: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Yep. Your doctor isn't very good. It's great that s/he diagnosed your CH at your first visit (assuming that you actually have CH*), but the prescribing . . . not so good. You might be able to get by if that doctor will listen to what you tell him/her that s/he should be prescribing, because we can help you with that, right down to what a prescription for oxygen should say. But if this doc resists O2, higher doses and proper administration of verapamil, and injectable sumatriptan, you need to look elsewhere fast. (You might not need the verap in the long run as you use the D3 regimen, but that's a different matter.) * Given the symptoms you describe, it's possible that you have a CH "lookalike" condition. Tell us a little more about your symptoms and when you get your "headaches." The "lookalikes" have a straightforward treatment, a medication called indomethacin, and some people think it should be tried early after a CH diagnosis to rule out the "lookalikes," which are called hemicranias. This is basically good advice, and it's probably what a doc would prescribe (Imitrex). But you can get sumatriptan in vials, with syringes, to measure your own injections, and that's a lot easier than disassembling the autoinjector.
  8. CHfather

    Hemicrania that mimics CH

    Thank you for this thoughtful response, Siegfried. I'll just add a few notes. One is that recommended dosing for indomethacin is all over the place, between 50mg/day and 300mg/day. And while some sources say the effects if indo can be seen pretty quickly, others say it can be a couple of weeks or more. So I can't help but wonder how many people have "tried" indomethacin but (as is also true with some CH meds like verapamil), not really had it at high enough doses for a long enough time for a fair test. Second, I would be cautious about any data regarding hemicranias, just as we have had to be cautious about CH data. Hemicrania wasn't recognized as a medical condition until the 1980s, and I'm going to guess that the majority of doctors don't recognize it, so it can be strongly underreported. I wonder sometimes how many cases of "intractable chronic CH" are actually misdiagnosed hemicranias. There was a journal article in 2001 with the title "Hemicrania is not that rare." One of the authors was the great student of CH, Todd Rozen. (https://www.ncbi.nlm.nih.gov/pubmed/11577748). Maybe current projections factor in that observation. Also, the women/men thing is highly untrustworthy in my view, because as we have seen with shifting CH "statistics" over the years, women quite often get misdiagnosed. Even though the hemicrania reports go in the opposite direction (more women than men with hemis; more men than women with CH), I just don't trust any gender-related statistics since there's no reason that I know of that there should be a prevalence in either direction, and so I tend to think it's a function of some kind of diagnostic error. All that said, your general principle is probably correct, and maybe people should treat things as CH unless standard CH abortives don't work for them. (On the other hand, there are some "experts" who say no harm done with first trying indomethacin so hemicrania can be ruled out.)
  9. CH Father, where or is there a link to get to the instructions on the Lidocaine drops referred to on Bob's doc. I have a prescription for the 4% solution. Bob explains and we will move forward with that and what the pharmacist may suggest. we are approaching our 4th bust. The nocturnal slap backs have been particularly mean Kip7-8  and take longer to abort, wanted to try the Lidocane to see if I can take the edge off and/or extend the time in between hits? aaannnnddd is a 60 mcg dose of L enough to be an effective dose for a bust? Just trying not to waste medicine and time!! Thanks for getting back to me. 357 out

    "D. Lidocaine drops.
    You need a prescription for this but it is pretty cheap and can help sometimes. For clusters you need a 4% solution and it is applied using an eyedropper. 'The instructions for its use can be found on our website and it is very important that it is done properly or it won't work.'
    It is a way to apply a treatment similar to an SPG block that you can administer by yourself.


    It's an abortive in the form of an anesthesia that can sometimes help you get some sleep. Lidocaine sprays do not help. Don't waste your time.
    The trick is to take a dropper full, lay down on your back, on your bed, with your head over the edge, tilted backward and downward, head tilted about 30 degrees toward the side of your cluster, and insert the liquid. You want to bath the nerve ganglion located in the backside of your sinus cavity with the liquid."

  10. CHfather

    Newb here

    Jost, there's a lot of information in this file about oxygen and other strategies: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ The vitamin D3 regimen is another thing that you really need to try.
  11. That's horrible. So sorry!!!!!!!!!!!!!!!!!
  12. CHfather

    Newb here

    Yes. In fact, you're lucky -- a lot of people have a lot of dental work, sinus surgeries, TMJ treatment, and other useless stuff done to them before they are accurately diagnosed. The nerve that is affected by CH covers a very large area of your face and head, and the pain tends to show up wherever the nerve goes.
  13. CHfather

    Newb here

    Trucker, FunTimes is right on. Read this, please. It's my best recitation of what I've picked up in ten years here. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  14. CHfather

    I need help from the veteran survivors of CH

    That's rough, Ken'. I don't think they're sure it's CH, or they probably wouldn't have prescribed indomethacin, which doesn't treat CH but a condition that's a CH "lookalike." You are getting three preventive medications and no abortive. That's pretty weird. Two of them, or all three of them, can make you feel like crap in various ways. You weren't prescribed either oxygen or some kind of triptan, such as Imitrex, for stopping your attacks? No attempt to try prednisone while the preventive cocktail takes effect? When you say "high doses," what were the actual dosages? (I'll bet they're not high for treating CH.) Are they monitoring you -- both Depakote and Verapamil should be monitored in the first weeks, for different reasons. Get on the vitamin D3 regimen. GET OXYGEN. READ THIS: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ What are your actual symptoms? Can't be still during an attack? Eye red, runny? Nose runny? Pain where? Pain when? How long? Shands has a good general reputation, but most docs suck at treating CH.
  15. CHfather

    I need help from the veteran survivors of CH

    Batch has modified the regimen a bit over time, but I believe the basics are still what is listed at the bottom of the fifth page (which has the page number "2" because it's the second page of the second section -- it's the fifth page overall) of this document: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 It's also the chart a little way down on this page: https://clusterbusters.org/forums/topic/1308-d3-regimen/ It does not look to me like you have the right stuff at all, and you need to stop the 25,000IU of Vitamin A right away. How soon you might see results depends in part on how low you blood vitamin D is, among other things. Usually it's at least a couple of weeks, but for some people it's quicker than that. Read in either of the two files I linked you to about "loading" to ramp up your D level faster. You can send a message to Batch by clicking the envelope icon on the top right side of the page and typing Batch into the "To" line. He's a great guy who will be happy to help you. How much O2 will cost also depends on a lot of things, including what your insurance coverage is. You either need to get a prescription from a doctor for O2 or set up a system using welding oxygen. Very different initial and ongoing costs associated with each of those. Having O2 will greatly reduce the desire you state to harm yourself. When you get started on it, get back to us and we can help you. In the meantime, I'd urge you to read this whole file. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ There are things you can do right now to reduce your suffering.